Caregiver overcomes obstacles on pathway to diagnosis for husband

Gena Goodwin finds refuge in her spacious and verdant garden as she moves in native plants from neighboring green spaces, digs up honeysuckle and trims lush hydrangea bushes. With her knees bent and hands in the dirt, she feels God’s presence. 

It’s the same space her husband, Bobby used to watch her as he looked out the window of their home after being diagnosed with FTD. 

“It took almost two years to get a correct diagnosis and there is no treatment other than to monitor the disease,“ says Gena referring to her husband’s Frontotemporal Dementia. Also known as FTD, it’s a group of brain disorders caused by degeneration of the frontal and/or temporal lobes and the most common form of dementia for people under the age of 60.

When her husband of 19 years, who was 63 at the time, began to exhibit unusual behaviors, Gena had no clue as to what was happening. The two had been best friends playing backgammon, watching movies and working in their yard and Gena’s garden together. 

But in the fall of 2016, Bobby stopped doing the things he’d always done like calling his daughter and best friend. “It was not like him to not want to be part of Alan’s life,” says Gena. He also started to make bad financial decisions, bounce checks and even pawned his beloved motorcycle. His behavior was so mysterious to Gena, she wondered if he was having an affair. 

Her big aha moment came when it was time to maintain the couple’s backyard pool and Bobby didn’t know what to do even though he’d taken care of it for years. By the end of December, Gena told Bobby they needed to go see a doctor. After waiting two months for an appointment the tests came back normal in February of 2017. Not satisfied with the answer, they went to Athens Neurology in March. After another assessment, the PA diagnosed Bobby with depression and was adamant everything was fine. 

At that time, a neurologist suggested Bobby get assessed by a neurological/psychologist. The test was run in September of 2017. It came back indicating mild cognitive impairment. He was prescribed Aricept, which Gena later discovered doesn’t help with FTD.

As Bobby’s behavioral issues and other symptoms continued to ramp up in December 2017, he stopped driving. Living with her husband who became angry, agitated and frustrated easily and still not getting the help needed, Gena began attending an Alzheimer’s Association support group. It was there that someone suggested they see a new neurologist, Dr. Steadham at St. Mary’s in Athens.

After listening and looking over past results and doctor’s visits, Dr. Steadham recognized something more than depression going. He added another medication and recommended sending Bobby to a therapist, Dr. Born. Working together, Dr. Born and Dr. Steadham communicated with each other to keep up with Bobby’s changes.  

Finally, in August of 2018, Dr. Steadham said Bobby had probable FTD. After running another cognitive test, it showed Bobby had gone from mild impairment to significant impairment. 

As someone needed to stay with Bobby during the day, Gena, an HR administrative officer with the US Marshall Service, began working at home.  

Then, in February of 2019, came yet another challenge. Gena applied for Bobby to live in the Georgia War Veteran’s Home, a state-run facility in Milledgeville, Georgia. She was told it would take a couple of weeks to get an answer, but it was more like three months. After sending several emails every two weeks with no response, she contacted her congressman, Jody Hice. A week later, her husband was accepted into the home on April 30. 

But that wasn’t the end of the struggle. In November of 2019, Bobby struck four staff members and two of them hit him back. So, he was sent to a rehab facility to try out new medications. While there for almost a month, Gena was told he would not be able to return to the Georgia War Veteran’s Home. Once again, she contacted Congressman Hice to let him know that her husband was no longer having problems since on his new medication. Once again, he was readmitted. 

“Looking back over the journey from learning about his disease to getting him the care he needed, it’s devastating,” says Gena. “Suddenly, you’re looking at someone who seems just like the person you’ve loved for so many years and yet, they are a person you don’t even know. You know it’s the disease. But in tough moments, it’s hard to rationalize those thoughts.”

Gena credits friends at church and her deep faith in God for helping her through it all. “I have an angel of a sister, who made sure I got a break every week for a couple of hours when I was still caring for Bobby at home. It gave me time to go to the grocery store or just go and sit by the lake,” she says. “I began to realize my limitations and let God give me the strength to do what I needed to do,” she says.

To learn more about the Alzheimer’s Association, Georgia Chapter visit alz.org/georgia.